I may be repeating myeself but I haven't posted often so this is just to help everyone know where I've been/am. Have appt with Hep doc on Oct 23. 2 yrs ago I had sudden onset of severe headache, after @ 4 days had to be treated at ER to get a shot to stop pain. Then @ 2 wks later woke up w/pain all over my body. Doc treated it as a "virus" except pain never went away. Got lots of tests to rule out bad diseases (except for Hep C). Doc put me on Lortabs as nothing else would touch the pain. Finaly went to rheumy doc who dx Fibromyalgia. Went to give a blood donation in Aug because my hemoglobin was high and thats when I was screened as "infected" with Hep C - confirmed by test at Health Dept. I've been on Lortab & Klonopin 2yrs, Cymbalta 18 mths, and xanax PRN 6 mos. In May, my feet and ankles swelled for a few days - thought it was weird cause that had never happened to me before. About 3 days later I got extremely sick w/vomting and diareah couldn't eat anything 4 days only liquid. Finally to ER for shot to stop the cramping and nasuea. Am wondering if cooreleation to HEP C. I took myself off lortab @ 3weeks ago - don't have the same pain as before but feel very sick. Am now taking med leave from work till I see doc. It's tough waiting to see the hep doc especialy since I was using the Lortab for so long - and Cymbalta which is not to be taken if you have liver disease but since it's an AD I can't just go off it without replacement. Have not had vaccine for A or B either. Comments are welcome. You all have been a great resource (and support) for me. Thank You!!!!
Sorry to hear all you've been going through. I had swelling in feet, ankles and legs. None of the doctors would acknowledge it was from the hep C. I haven't let up in persistantly telling them, that there is no doubt in my mind that this is what it is from. I had difficulty finding anything documented, but over recent months a few members mentioned they also have the swelling. Missmiss is one of the members. One of the tests you may want to consider is a test for cryoglobulins. The test has to be done at a place where there is an onsite lab. It is a thermally sensitive test. I had it done and I told the doctor it wasn't done correctly and actually,,, I shouldn't have been sent to LabCorp,because they DON'T have an onsite lab. Of course the test came back negative because of it being done improperly.
Evidently 45% of people with hepc have cryoglobulis, but this test for whatever reason isn't ordered for everyone. IMO it should be even if there aren't visible symptoms. i'm not saying that the swelling is related to the cryo, I honestly don't know. I found out that my doc orders the test for everyone. I thought she ordered it for me because of my symptoms. Even though mine was not done properly, she said that the tx will get rid of the cryo, if its there anyhow and we won't have to do it again. Well I don't like that answer because why order it in the first place then and plus I have read that some don't clear the cryo.
This is all a pain in the neck. Its important for us to have an understanding of what a doctor is doing, but the more you learn, the more you see the cracks that you continue to fall through and when you speak up or question, they want to put you on Ad's to keep you MELLOW,well I should say that's been my experience. Glad my husband knows nothing about Ad's. My morning coffee will start tasting bitter. lol But anyhow I showed the nurse this article below and she now says yes the swelling can be from hep c. They've seen leg, ankle, feet swelling in the practice. Well they told me it was not related to hep when I first showed them. This whole thing is getting tired. I thought it was cirrohsis, and swelling can be a sign of that, but it seems that it doesn't have to be that,this is just another extra heptatic manifestation, that 'not" everyone gets. Mine is alot better. For a while my legs felt very weighty,now they feel light again. In this article, you will read about aches pains and scroll down and you will read about a lady with swelling also. Dr. Ben Cecil, basically says doctors have to recognize that there are all these diffent symptoms going on with people and he touches on autoimmune issues.
One big pain in the neck. Speaking of neck, that's where I had the pain and shoulder, Thank God its gone. Lots of people on forum have aches and pains also. Who knows why hep causes this, but the liver effects so many things,,hormones,vitamin storage,filters toxins etc. If the hormones are effected and lets say you have low progesterone, your bones will be effected. Progesterone is needed for bone building, (osteoblasts). My progesterone is low, might be from liver or perimenopause, but I started useing biodentical progesterone cream (natural). My bones feel fine,no more aches and I feel more relaxed because I am no longer estrogen dominate.My husband might tell you other wise though.
I just had the first shot of the hep B series. I don't know if I mentioned that yet, and Hep A ,I evidently had and I am immune. Have no idea when I had it.Go figure?
Hope things work out. If you read this article, it may help.
Thanks for the link. This is all so very complicated isn't it? Funny thing (not ha ha funny) my primary doc dx me with rheumatoid arthritis just because my SED level was high in Feb 2005 although I have NO symptoms. Referred me to a rheumy doc who said she never uses SED levels to determine because she doesn't believe they are reliable and proceeded to dx me with fibromyalgia. So there you go. The article really explains a lot for me also because over the last 6 years as I look at my lab reports (just got a copy of my records last week) my labs are all over the place and when some have been repeated - low thyroid and high glucose - two weeks later they were normal. Arrgggh. And I thought having fibromyalgia was confusing!!!
I felt it was a good article also. Are you going to go for treatment? I thought I found a good doctor and that she may be, but moving too slow for me. If her office was open today, I would call and say "nice knowing ya, bye." Its getting to me that I could have been finishe next month if she would have started me when I had gone to her first time. She wanted to wait until summer was over and start this week. Now more delays,I don't feel like having to look for another doctor, because its hard to find a place where you will like everything about it, but I think I may have to move on. So frustrated.
I think your pain could possibly be related to hep c. I experienced similar pain issues before I knew I had hep c. I was hospitalized twice and none of the doctors could figure out what was wrong bc I was otherwise healthy and relatively young. There is no other explanation for the sudden onset of severe pain I had.
That was me. I'm 51, never been seriously ill (normal colds, sinus infection,etc), no surgeries, never hospitalized except to have babies, never had a broken bone, stitches, nothing! - very healthy, low cholesterol then BAM! It was so sudden.
Hey, I too was misdianosed for 3 years. I had low platlets which is a symptom of end stage liver disease. The hemotologist dianosed me with an auto immune disease and treated me with 6 months of high dose steroids. The steroids probably made things much worse as I was stage3 grade 4 when I had my bx last month. I am now on my 5th week of treatment. My Lawyer said that it would be too hard to prove damages (even though I lost 3 years of my life and my disease is much harder to treat now) He says that I could have been this far along even without the doctors mistake....no case. I do need to look around somemore but this other lawyer was my friend and I really don't know where to look. I do believe that the doctor should be held accountable. He did every test know to man(including a bonemarrow biopsy) except liver enzymines or hep c. Oh well, It's my fault that I have hepc .....not my fault that I was misdianosed for so long.
You've really been through the mill. It's tough. I was afraid of tx when I found out, but because I've been waiting and waiting, I'm chompin'at the bit.Now, I long for that needle at this point as a junkie craves his fix. Maybe this was Gods way of getting me over my fear,,,,because the fear is GONE, GONE GONE.
I wouldn't doubt if all those meds added to you're not feeling well. It must be hard on your daughter to see you not feeling well. Kids worry about their moms. I hope she' okay.
Well, I wish you the best, stick around for the support. Many people on board, so someone usually has had/have a symptom we you may have, so at least we can all compare notes as to how our doctor handles it. On forum is how I learned about the proper procedure for the cryo test, so there is always someone here to help us on our journey. Sometimes we have days where we just want to get a comfort and reassurance, so it doesn't always have to be a technical question. Support comes in all forms. And there are many funny people here, so sometimes when your down, you'll read something that will make you laugh and get you through the day. Last but not least...once in a while there are disagreements, but we all get over it and things go back to normal. I think this forum would make a great reality show.lol
This malpractice atty is reputed to be a bulldog and was recommended to me by a private investigator I know who works with him. I don't know how I contracted Hep C as I am not in the high risk group, have a high level management job with the City Municipality where I live and have been extrememly active (excepting the last 2 years when I had to cut back dramatically) and well known in the communuty for the past 15 years. This is HUGE for me.
Today my daughter is with her father and I always feel at a loss when she is not home. Also, since all my helper people have been dealing with their own crises or busy with work yesterday I had to mow the lawn before it took over. It was good therapy while I was doing it but I knew I would pay the price today and I am and I am feeling really depressed. At least when my daughter is home I keep busy with things to do with her which is a distraction. My adult son is coming over in a little while so that will help. Usually my greatest uplift is visiting my 2 yr old grandson but both he and his very pregnant mom are sick so it's a no go today. Think I'll go take my dogs for a short walk - get out of the gloominess. Thanks to you and everyone here cause at least I know you know what I'm going through because no one in my world does and that is understandable. It's hard to comprehend.
I have been referred to a group that specializes in infectious diseases. I have been told they are the best around by my pdoc and by the infectious disease nurse at the Health Department. My appt is Oct 23 so I don't know anything at this point. Reading all of the posts makes me very scared about treatment. But I guess I will just have to wait until I find out what damage has been done. The fact that I have been takng a lot of an opiate narcotic (Lortab and tried pain patch for a short while but it made me really sick, duh!) for almost two years plus the other meds that are toxic to the liver has me quite worried as well. I have been in touch with a malpractice attorney about this as well. There are 3 docs involved: pdoc and 2 rheumys. Atty thinks the first rheumy who dx fibromyalgia is the culpable doc. He says the question that has to be answered is if I did have Hep C at the time of the fibro dx and was properly dx with Hep C, would I be better off now than I am. Also there is a statute of limitations and the window closes in March. But if I am very sick have to think of what the future holds for me and I still have an 11 yr old at home (I'm divorced). I am out of work starting Monday on short term disability because I can't function at work and at home - one or the other - so I had to choose. I was also out last year for 12 weeks b/c I got so sick after the 1st rheumy's rx made me so ill I good barely stand. At the time, I felt like I was being poisoned. Now, looking back my liver was probably very toxic because of those meds and was making me sick. It was a horrible time. In the beginning of all of this my pdoc thought this was all viral but when it didn't go away is when he sent me to the rheumy. It all sort of makes since now but my life for the past two years has been one of mostly just existing. Long answer to a short question!!
I think also we shold be careful about sx...though the flu you feel is no doubt form tx. Case in point: excuse me for being so graphic, but i just the worst case of diarhea since I can remember. I immediately thought it was tx..then I also realized that the new vit c that I have been taking I accidently exceeded dosage. I first that it was that; then I went to get some soy milk out of the fridge happen to look at the containter of sun dried tomatoes that I had with dinner...they expired on 12/04!!Then it made think how careful I have to be not to tax my liver during tx by being careless in regrds to eating food that could be bad??
i had swelling ancalls legs some times my arms and guts for about 1 year wen i wood swell i cold gain 7 to15 pounds thay ran tests and found my salt leval was real high thay put me on a 2000ml max of salt and water pills dyrenium
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